Saturday, December 15, 2018

ndis and ecomonic development

When it comes to creating government polices the government likes to spout about economic growth and reform. This is where a piece of lesigstration is created to either create jobs, encourage spending or lead to a stronger Australia economy.  When it comes to the ndis most people view it as welfare reform or socially the right thing to do.  Neither view is correct, so lets look at the facts.

ndis reform and productivity increase 

How does the National Disability Insurance Scheme impact the Australia Economy? You may of heard the phase 'the ndis is reform for all Australians', one of the primary reasons is employment and job creations is at the heart of the reform.  Given the increase in the number of Australians being able to assess support for daily living, more jobs will be created.  

One example of new jobs created under the ndis is the area of Assisted Technology.  More people with disabilities are finding their Independence in the community is increase through technology.  For participants to be able to access these devices and equipment, such as computerized communication devices, specialist in IT are needed. 

The key agenda for ndis reform is to enable people with disabilities to access the wider community and participate in the local economy.  This can occur through skills development, education, training (including life skills courses); employment, community work, sports and recreation, and arts and culture.  If people living with disabilities and their families are out and about the are spending money and therefore contributing to the growth in the economy, which stimulates job growth. 

One of the access issues for both participants and their family members has been access to employment.  People living with disabilities (this includes family members) are more likely to be unemployed or underemployed putting strain on the welfare system. Until now family members of participants with profound disabilities have been unable to work, as they have been full time carers for their love ones.  Families can now access before and after school support and day respite to allow members of the family to return to study or the workforce. 

I like to refer to people with disabilities as the most under utilized resourced in the community.  This occurs for a number of reasons. 

  • Community attitudes
  • Discrimination
  • Not recognizing ability
  • Putting people with disabilities into the same box
I have written much on the miscomceptions around disability and the struggles to dispel in gain beliefs on what it means to live with disability. So we have began to look at a small section of those living with disability in terms of employment.  Family members of participants who are profoundly impaired.  No one is expecting those in need of 24 hour care to go out and find work.  For this group of individuals  ndis is about increased opportunities for family members. 

So we need to define both what is disability and what is not, because many people are labeled disable for the wrong reasons, and a general assumption that people with disabilities are unable to work.  This comes from the welfare model of disability.  Many people on a disability pension are medically disabled or unable to work.  This level of disability is not impacted by the ndis reform. 

Under the scheme participants are those individual who need some type of assistance with daily living tasks.  This could be provided through an assistance dog, technology, software, early intervention, physio, support in group settings and individual support.  Despite public perception very few people with disability need 24 hour support. So the first thing the ndis looks at is over a persons life time how can we support them to be more independent.  So we are moving away from creating dependence on government resources to being independent of others. 

In other words we are moving away from a model where medince defines disability to a social model of disability.  Under the social model disability occurs as a result of a impairment in the normal function of an individual. The ndis only looks at a persons impairement to determine eligibablity.  The ndis is not concerned with what someone can't do, but the thinks they can do and how ndis can asist the individual to participate in the community.

ndis explores ability not disability

It is hoped that some participants will move into being employed, self-employed or giving back to the community through volutarteeing.  The presumption that disability blocks every aspect of ability to make a meaningful contribution is one that needs to be dismantled.  I like to think I am a great illustration of this. 

The general community (those who do not know me) assume because I sometimes use a wheelchair, I can not walk and because I have a communication disorder I have an intellectual disability. Even those who know I do not live with me family, I live in support accommodation.  All of the assumptions of false, here we start to see misconceptions alone provide access issues. 

Now you would think if anywhere the facts would be known it would be the disability sector.  Wrong!  I have worked in the sector for nearly 20 years (although in the main this has been unpaid) when I show-up for work 95% of staff confused me as a client.  Where is the art teacher?  Well, today I'm afraid I am it! Are you and your client joining the class or not?

I am the founder of Ignite Artist
We support artists with disabilities.

Let me tell you about myself, I am Debbie Chilton BA among my many achievements are a degree in behavioural science, poet, publish author, visual artist, Queensland Representative for Supported Art Studios, community leader and disability advocate. I live independently and share my home with one very spoiled cat. So what in my CV spells out I am incapable of working. 

 Let's add small business owner and designer.  I am now designing everything from t-shirts, aprons, mugs and now tea pots. I am self-employed and my business is finally growing. Still not profit but I am now getting at least one sale a week.  I am part of the Ipswich Women's Business Network and in addition to my giftware range, I regularly exhibit in a number of galleries.  When you look at my artwork do can't not see my disability, only my abilities. 

I am widely known for my skills as a print maker

Despite my CV I have never held paid employment.  I have had short-term contract work, but most disability providers expect me to work unpaid even when I am the most qualified team member, such is the communities economic value of my skills. Don't get me wrong I love my work and obviously money is not my motivator. I am just one example of the many Australians living with disability who are underemployed and skills go unrecognized. 

Fast forward to 2019 and I will have paid employment.  I hope to be supporting other people with disabilities by sharing my skills and knowledge on the ndis, self-directing, selecting a support team, art, business skills and promoting my employer Hire Up. I am proof the the ndis works, in the way it was designed too.


I employ workers who have never workers in the disability sector before; my business at least has achieved a turn over; and I am getting job offers. 

I challenge anyone who does not see the National Disability Insurance Scheme as an economic reform. The fact that I will always be type cast.  That is other people's issues.  Under the ndis I am continuing to move forward in so many areas of my professional life.

Retro Diner A fun place to base my work life! 

NDIS Economic Reform Facts

  • The ndis is not a form of welfare and is completely separate to Centrelink.
  • The ndis is independent of any other assistance a participant or family member receives.
  • ndis participants may be on a government supplement or be looking for work or be employed. The employment status of the participant does not factor into the size of their ndis plan.
  • Every Australian with a disability is not eligibly.  Some participants will be on a disability pension but many won't be. 
  • Most people on the disability support person are not eligible for the ndis. 
  • To be eligible for the ndis you must have a life long disability that affects daily living function to a point that you need some form of assistance.  This may be a mobility aid, technology, animal or a person or a support service. Only 460 000 Australian will need to access this type of support. 
  • Most participants are children of people who work or people who work themselves.

Friday, December 14, 2018

Self - Directing and Support Worker Role (ndis)

The National Disability Insurance Scheme gives participants and their families and/or their carers choices around how they want to be supported; the support agencies they want to access and the times they would like support.  On my blog we have explored many choices on how you can ask for your ndis plan to be administrated. 

One of these options is to self manage, if you are self-managing your plan or someone you care for, you are the person responsible for spending the funds as set out in your plan.  You might remember I shared information on some of the supports you can access to enable you to do this effectively.  For example you can ask the ndis for a plan manager, this is a person or organisation who can advise you on budget choices and usually pays your invoices on your behalf.  What services and supplies you access is up to you.

Self-managing gives you the greatest flexibility under the ndis, as you are not restricted to using a ndis provider.  For example you can use any registered physiotherapist, if physio is included in your ndis plan.  If you struggle with housework you may prefer to hire a cleaner rather than a support worker, so you can use that money on other things.  If you are self-managing you can use your plan to pay anyone with an Australian Business Number to provide you with support.  However, there are some things you will need to be mindful of. 

There are a number of ways you can engage support workers.  

  1. Self - directing support staff services.
  2. Agency support staff
  3. Support staff with their own ABN
  4. Setting up your own personal support services. 

Every employer has a duty of care to their employees and their clients, to do this they develop policies and procedures along with general guidelines on how to support clients.  Different organisations will require different levels of training.  If you are self-directing you can decide the level of training you want for your staff.  However there are industry requirements around training for some types of support. e.g. peg feeding and manual handling.  An employer has a duty of care to provide the correct training to protect their staff and clients.

So what happens when support is provided under an agreement of two parties ie you the participant and the support worker.  If the worker has their own ABN then they are responsible for their insurances and payroll.  You have the right to ask for any documentation that will ensure your safety.  This is not a friend doing you a favour and thus you need to check their qualifications. I recommend that you put together an agreement, something in writing and print a copy as digital files can be altered after things go wrong. 

So you want to spell out what happens in an event of an emergency. Is the worker and participant covered for injury and how? What is the paid rate and are you guaranteeing a set number of hours?  What happens if there is a disagreement between the two parties, how will workplace disagreements be resolved? Do you have someone who can play a mediator role?  There are advocacy services you can access if things get off track, but a written agreement that sets out how things will be resolved if any party involved is not happy is required.

So if your are directly employing a support worker you have the sole responsibility to provide working conditions under the employment act, and you can read this online or contact employer services.  In this post I am only discussing what you might term human service not the financial responsibilities.  So that is things around duty of care, insurance and work place practices; professional and personal boundaries.  In any work agreement of this nature both parties have a legal obligation to show due care for the other.  This covers accident and income protection; physical, emotional and psychological harm.

I know participants not considering these things fully when engaging workers, but I personally do not want to go down that track.  I want to care for my workers workplace needs so hopefully they will also do the right thing by me.  So what happens in the absence of polices and procedure?

Many organisational policies are developed around different legislation such as work, health and safety.  This applies to all workplaces and if you are engaging staff to support you, you must provide safe working conditions. This is something that falls under due care.  If you require someone to work more than 10 hours than that could be seen as not taking due care for a worker.

Regardless of how a support worker is engaged, there is an industry standard of practice and this too can be found online.  I would be wary if any worker, that dismissed any legal responsibilities and workplace safety.  e.g I do not have to follow PPE.  I got this a lot when I accessed traditional support providers,  Nah, we can wear thongs.

As an ex-member on a Board of Management of a Service Provider, I know under workplace and safety laws closed-in shoes must be worn.  I like to say if my health and well-being is at risk I have a right to feel safe and I don't feel safe if you are pushing my manual wheelchair in thongs and if I am hurt that will come up in a court of law.  So if I have trouble asking for professional boundaries when people are employed by an organisation what hope do you or I have with only a working agreement?  I have tried it once and for a long-term working relationship I would not do it again. 

Support workers are very forward about their personal comfort, and their perceived duty of care, that they often overlook the obvious. Like coming to work with an injury or when they are emotionally unfit because they need the money.  

People will do anything they think they can get away with. Which is why I think participants who self-direct need good personal boundaries as well as ensuring professional boundaries are followed. 


Professional boundaries apply when there is a working agreement between two parties, this can be either paid work or unpaid work and does not apply to friendship where a person might be 'just doing a good deed'.  This is why you want a working agreement in place, so you have a clear line defining the person is 'at work' not just hanging out with you.  In most industries when care and support is given there is a code of practice among privacy, confidentiality and respect.  In my opinion the code of practice stands regardless of who a support worker is engaged with.   That includes being contracted under their ABN.  Using an ABN does not make the support worker the boss.  This is referred to as self-directing support for a reason and that needs to be made clear at the start of the working relationship.

For me, whether we're talking about privacy or confidentiality, respect for the person is involved.  Participants due to the nature of their disability need to allow workers into their private lives and homes.  For some participants who require high personal care, that will require contact with private areas of the body.  The participant has a right to feel respected at all times.  I am unsure if some workers are fully aware how much trust we are required to put in them.

What is private and what should be kept confidential? So obviously as a epileptic I want my workers to pass on some private information to people who are providing medical care.  Things like Deb is allergic to . . . . . while I am not going to give you that information, I want the paramedics and hospital staff to have it.  I also access a medical on-call service so I also want them to have that information.  However, anyone outside the call center should be told nothing of the emergency situation.  So a support worker should not be saying anything about a medical incident that occurs at work.  Personally, I don't mind my workers saying Deb had a seizure today, a partner is a good person to give a debrief.  Any details of the incident are private, unless an incident report needs to be written for a workplace.  Unless my seizures are out of the ordinary or my seizure response plan is not followed my  providers are not required to write a report.

As incidents occur, I realised bending rules like support workers family members knowing where I live is not fair.  I had a worker whose partner dropped her at work.  When the two broke up and she took out a Apprehension Order against him, he knew where she worked and the time of her shift and he would wait for her to leave. What seem like a harmless breech in client confidentiality put my personal safety at risk.  Most policies and professional boundaries are there for a reason. 

This why service providers discourage friendships. Friendships blur the professional boundaries. I also think my definition of 'friendship' is different to most people.  I have a wide circle of friends and an even wider circle of colleagues.  I do not consider even artists in Ipswich as my friends, but there are a small number I have a very close relationship with.  While I am to a certain extent very open, there are some things I only share with people I trust. 

While self-directing has certainly changed the dynamics between myself and my team we regularly discuss our work boundaries and we check in with each other.  Is there anything I am doing that you are uncomfortable with?  Of course this is much easier to do in a team where we all have strong personal boundaries, it is much more difficult when people don't respect my personal boundaries. 

I engage some of my workers through a self-directing service, these staff are hired and trained by me, but are employed by a service provider and I don't share them with other clients.  However, as my readers know I engage staff through online platforms such as Hire-Up and Mable.  While both these companies do have duty of care to me as a client, some of the agreements are much more causal. So even though both I and the worker are aware of workplace health and safety laws,  workers still turn up in thongs and want to debate PPE policies.  

You can only imagine if workers are challenging policies enforcing laws what other boundaries a blur are bent or broken.  Everything is fine while all parties remain respectful,  but when trust is broken or one party feels taken advantage of, what seems harmless at the time can lead to repercussions.  Recently, I have experienced this with workers, who talk freely about other clients they work with and who may be expecting I might want a similar working relationship as other clients.

Like I say I am abundantly blessed in the friendship department and I do not pay any of my friends to give me a lift to a function we're all attending, or to pick up a few things at the shops.  When workers discuss other clients as if they are friends, what are they saying about me to other clients?  When workers share mutual clients and I have a fallout with one worker, how does that affect other workers on my team and any clients they may share? 

Clients should never be discussed with other clients or in front of them even if it is not private information.  As far as I am concerned what happens on shift or in my home stays on shift, if I am being told personal information about another client, I am sure my personal information is being shared also.  I, like every other Australian have a right to know who knows what about me in the event we might one day meet.  What workers share with other workers could be classed as gossip and hear say. Likewise, if workers talk to me about other team members about anything unrelated to me, then I have no yard stick to know if it's the truth or not.  Not to respect someones privacy is just bad work practice.

These are gifts to offer as friends and do not expect anything in return.  When workers give me gifts and do favours, I get worried.  I don't mean when they bring me produce from their garden because they know I will return the favour.  I mean things like buying me hair accessories so they can put them in my hair.  This means a worker is making choices on my behalf and I feel obligated to accept these and be grateful.  This too is harmless and things can and have previously spiraled out of control.  Maybe for some I am too black and white. 

Communicating with workers on social media seems harmless especially when you have an open and honest relationship.  However when boundaries are already blurred, i.e. I am told things about other clients, then what seems like a very safe post about enjoying a night out, can hurt a client who you lied to and cancelled their shift.  If you are cancelling to catch-up with friends, just be honest. Something just popped up would you mind. . . .  I now need to consider if I would be friends on social media with workers I engage in the future. 

I do believe participants who have strong personal boundaries and work with workers who have good professional boundaries even if a participant is self directing, as long as both parties respect each others boundaries even friendship on some level is possible.  I am also aware as an artist and public figure, boundaries are already blurred, so I like to discuss this up front at the beginning of working agreement. 

Thursday, December 6, 2018

Self directing, personal boundaries and the ndis

One of the many choices participants can now make under the National Disability Insurance Scheme is to self-direct their own supports team.  This can occur under a number of different models.

  1. Some support services offer self-directive services.  This is where support workers are employed by the service to work with a specific participant.  The service I use offers several different ways to self-direct.  Having strong professional boundaries is important to me so I wanted policies and procedures to protect both my workers and myself.
  2. There are new types of support services emerging as participants are encouraged and empowered to direct more of their supports.  Participants can completely self-direct through becoming a sole-trader with an ABN  (Australian Business Number) or they may contract workers who have an ABN. 
  3. In addition to the staff I engage through the support service provider, I have been engaging staff through online platforms like Mable and Hire Up.  These companies offer the legal protections under their policies and procedures.  Participants agree to follow these when they sign their service agreements.  
  4. If you are engaging your own support workers through their ABN or your own then I would recommend there be a written agreement of what happens if either party is injured, hurt or abused in anyway.  As an employer I want to ensure my staff feel valued and protected at work or they waver their right to compensation if they are injured.  These are some of the issues participants are not considering when they engage support staff.

When you're thinking about engaging your own worker, you need to be clear on:

  1. The personal qualities of the worker.
  2. The types of activities you will be doing together.
  3. Will the worker be required to drive.
  4. What hours are available and what is the pay rate.
Traditional providers have a screening process to ensure workers are trustworthy and will treat clients well.  As an individual you too can request your workers have police checks and road worthy certificates if you are traveling in their cars. It's all well and good to say your working partnership is based on trust and honesty, however when things go wrong, people become bitter and self protective. Sometimes things end up in court.  Policies and procedures of services are there to protect participants and support workers. 

What does a support worker do?

Under the ndis the support workers role is to empower participants to achieve their ndis goals. Historically Lifestyle Support Workers were carers or personal care attendants, depending on what the needs of the person with a disability were.  These workers had a 'care roll' and a sense of responsibility for their clients.  Today a 'carer' refers to an unpaid person who plays a caring role in the participants life. In most cases this is a parent or family member. A common community misconception is that all people with disabilities have carers. 

Carers are often legal guardians of adults over the age of 18 that need protection in some aspects of their life.  Usually in matters regarding money and the law.  Some people with disabilities for whatever reason prefer to use the public trust.  It doesn't matter who I am out and about with: a family member, friend or worker the general public assume it is a carer.  Over the years I have had all sorts of questions, including Do I need to call someone to check it's OK to spend $20?

Umm! They could try my cat!  However even if I did have a guardian I would not need to check for such a small amount. This poses a good question on what are the responsibilities of a support worker.

Every worker engaged to support a person with a disability has a responsibility and duty of care at all times. However, this is not a decision making role. Most support services are moving towards a participant centered approach, where the participant directs how a support shift is structured, not the worker.  In some cases this will be guided by a parent or carer. And a support plan will direct the areas in which the participant needs more guidance such as handling money, behavioural support or medication.  In these cases workers must follow the support plan or they are legally responsible.  

Support plans are not guidelines or suggestions the are legal documents that are part of service agreements.  If workers do not follow plans and things go wrong, they will be held legally responsible.  As representatives of an organisation they must carry out directives in the support plan.  Platforms such as Hire Up and Mable do have support plans for all participants, part of their agreement in using the platform is agreeing to activate the participants support plan. 

Even if you are directly employing your own workers you can attach a support plan to a contract or working agreement. Support always works best when expectations are clear. No matter who is the employer, the participant is paying them under the ndis. They are directing. 

Boundaries are the things in our lives that protect us and those we are with from harm. A fence is a good example of a boundary, if a fence is locked then people can not enter a property. If it is a pool fence this keeps children from drowning.  So all boundaries whether they are seen or unseen provide protection.  However, not all people have good boundaries, people still try to break into houses. If we are working with people who have poor boundaries we need to ensure out personal boundaries are strong .  I do not allow people to smoke on my property, not even my family.  That is a personal boundary I have that I may not share with others.

If a worker is employed through an organisation there will be a policy around this and in Queensland there is generally a no smoking in the work place rule. As a participants house is a work place you can not legally smoke in their home.  There is also a professional code of practice a support worker must follow, these are referred to as professional boundaries. When support staff work in a community setting organisations and individual employers rely on staff to do the right thing. 

For me boundaries all come down to one thing, respect.  I like to remind people that respect is a two way street.  If you want to be respected and trusted you need to be respectful.  'Trust of a participant is not a given, it must be earned.' Under self-direction agreements where trust is broken a participant is entitled to end the agreement. Ultimately this may be the protection they need to take. 

In my home I have three very simple rules:

  1. Respect for self (Worker) - own your own values and beliefs, know what they are and do not use them to influence others. (participants or team members).
  2. Respect for participants, their family and their homes - Think how you would feel having to let people into your home, your personal space and bedroom.  People with disabilities who need support have no choice. You need to respect their space. You do not need to interact every part of the shift, that is an invasion of privacy.  Participants don't want to hear your suggestions all the time, they want to be supported to live their own lives. 
  3. Respect for other support workers or professionals in the participants lives, this may include family members. Your way of doing things is not the only way.  There is only really one right way,  the way you are directed.
To break any of my simple three rules means you will be asked to leave my house.  Likewise if you feel disrespected I would expect you to terminate a work agreement. In a ndis environment more and more we need to insist on good personal boundaries. 

In self-directing there should be not be an increased threat of harm to participants. My workers role is to empower me to achieve my ndis goals. 

Saturday, November 24, 2018

ndis its not always a hit to be a square!

After years of not fitting into any boxes and being squeezed in anyway so I could access some supports such as in-home supports and community access, I am now participating in the ndis and living what I consider to be my best life.  The ndis supports individuals and families living with disabilities that impact their daily living skills meaning, we need assistance with things such as personal care, feeding, meal prep, mobility, transport, house work and accessing the community. 

My name is Deb Chilton I was born with spastic quadriplegia, which basically means cp effects my entire body, but not my intellectual ability. I was one of the first students with disability to enter into the mainstream education system in 1976. After school I was the first known person with a disability to enrol at the D.D.I.A.E now known as the University of Southern Queensland. Prior to the 1970's it was assumed students with disabilities could not learn. The Queensland CPL assumed after school I would work in their shelter workshop and refused to believe my reported academic achievements. This was simply not possible and the academic literature supported that view. 

In 1991 I completed my Bachelor of Arts and continued to turn my back on being supported by the disability sector.  In my thesis I had researched the growth of Supported Employment, but personally did not see the need to access that service myself.  I was gun hoe on Changing the World through my faith in Jesus Christ.  As a Christian my church background and lack of Christian network made my transition to Crusader for Christ difficult.  I was still a misfit but passionate that Jesus was the key to transforming lives. 

However that track halted as I faced chronic health issues for the next two decades of my life.  For me once again I experience disability but remain determined to live a 'normal life' and established great networks in my local church, making various attempts to study and find my passion.  I now know I had chronic fatigue syndrome and a non cancerous brain tumor causing havoc, seizures, hallucination and panic attacks, but diagnoses and effective treatment waited until I was 48.  Through it all my faith in Christ kept the flame alive. 

Depression was a lonely time and many days the light seemed to blow out.  I still failed to tick boxes and drifted through life looking for my calling and purpose.  By this time I was living in my own home; writing for Creative Christian Enterprises and researching my Children's book.  I spent the next 5 years writing a book, being involved in the Ipswich Poetry Feast and sitting on various committees and boards of disability service providers, receiving 10 hours of support a fortnight.  Officially, I was not disabled enough to need assistance.  Service providers did what the could to beg and borrow funding to support me to live independently, but I experienced first hand a broken system of disability care and inappropriate care.  I needed to wait sometimes until 2 pm for a shower to start my day. This made life difficult to juggle. 

Until one day it was all too much and my immune system crashed and I spent three month clinging to life. Its was gaining access to the disability support services or die.  The doctors were blunt and held me captive until the department gave me the support I needed to stay alive.  This illustrates the critical shortage of funding for the disability sector in 2012.  This is why Australia needed National Disability Insurance Scheme, without people like me had no control to direct their own future. 

In 2015 the federal government and states finally signed up to fund the ndis and the roll out of the ndis will be completed by the end of next year, for many its too late but for others it keeps the light burning.  The days of ticking the boxes to receive any type of support are over. 

My story illustrates why Australians needed a sweeping reform for the disability sector. Leading into the birth of the ndis Australians treatment of people with disabilities had been raised at the UN and Australia was pushed to address the rights of people with disabilities.  This empowered us together our collective voices to march on Canberra and demand to have a voice.  The disability care system had led to abuse and neglect of 100 000 people living with disabilities, some of these were unable to speak for themselves; to be heard as individuals we needed collectively to say to the Australian people Everybody Counts and Australians with disabilities should be given a say in their future.

Speaking at the opening of the Ipswich Area ndis Office and assisting in shaping the ndis is one of the things I am most proud of in my life's achievements. The fight for equality is far from over, the ndis is riddle with teething problems and pathways remain blocked by access issues.  Future funding of the ndis is still needing to be secured to ensure the ndis is everything we fought for and every participant has choices around how they are supported and who supports them.  Many still do not exercise their rights to challenge the system the struggles to let go of controlling their lives and others still face abused because they remain dis empowered to speak.

The founding principles of the National Disability Insurance Scheme is the right to determine how you or the person you have guardianship for want your life to look like.  This includes basic choices about where to live; who you want to live with; what school your child will attend, what early intervention programs your child accesses; who your physio will be; what disability support services you will access; who you want in your home; the right to choose your support staff or the support activities you engage in. 

The journey for every participant and those who support them begins with planning and researching how to shape their lives under the ndis. This could include family members, support workers, workmates or the blokes from the pub.  The person with the disability can choose who they want to support them on their journey and some choose the postman because that's the person they trust to advocate on their behalf. However the legal guardian must sign off on the final plan before funding is released.  

Those under the Adult Guardian must have a representative involved in their planning meeting, but the ndia can manage the participants plan on their behalf.  Regardless we need to ensure these participants choose how they want the support structure to work.  Every ndis plan is built from a participants ndis goals. These are the things the participants wants to do or how they want their week to look like. For example they might want to play golf or look for unpaid work.  For every participant the goals will be different.  To ensure the plan is based on the participants choices its best the supporters who attend the planing meeting is not representing a disability support provider.   The may offer support coordination in the second phase of planning but where we can we want to ensure it is participants or guardians if the person is under 18 making their own choices.  

I have been participating in the ndis scheme for a year and a half now and one of the goals I have been working on is improving my independence. The ndis has set aside funds so I can access to improve my daily living function.  I can use this for occupational therapy assessments; physio or exploring assisted technology options.  Through accessing physio I am standing, talking and walking more.  An increase in strength has seen a decrease in seizures. It has given me back my life!

Today I launch my Retro Diner Range. My other ndis goals are around self-directing my own support team of workers; extending my art practice and having my first solo exhibition outside of Ipswich. 

Participants goals can be around home life or accommodation; schooling, education or training; work or volunteering; friendships and relationships, improving independence, something they love, learning new things or life skills; sports or recreation.  So very few participants are going to choose to become astronauts, but a few may want to become more independent and move out of home. In choosing goals you want to be realistic; not every two year old will learn to walk and not every participant will want to start a small business.  Whatever your ndis goal make them about you and not about your supports.  Once you have your ndis plan you can choose your service providers or talk to current providers about how to achieve your goals. 

The next stage in the planning is about the 'how' to achieve your goals, its still not about choosing your supports.  Rather how will you learn to paint with oil paints and how do you want to be supported? Are you learning for fun or do you want to sell your artwork? This could involve education or training; or you might want to do this with a support service you will access. Here you want to fill in the daily activities you will engage in.  So supports are no longer about your disabilities, but the things you enjoy doing.

For some participants and families there is one more choice to complete the planning meeting. Who do you want to manage you plan and funding? The ndia; someone else or do you want to do it yourself.  You need to discuss with your supporters; family and planner ways you can achieve this and what supports you will need. I am self managing and directly engage my own workers, but I access other things like assessments for equipment through service providers. 

The ndis is bringing new flexibility and options to the lives of participants, but its ok to leave things as they are too.  For some people change brings disruption to their lives.  The really neat thing about the ndis is you are never locked in and you can always change your mind.  I was sneaky and even wrote this into my first plan. I had a three year plan to gradually do more of administrating my plan myself and that is really working well for me and I am growing in confidence and independence and essentially that is what the ndis was designed to do. 

Participants who are more autonomous now have greater flexibility in the way their supports can be structured. Those who self-manage can even use non ndis providers and not be locked into service agreements. So years after wanting to find the right box and be square, boxes are finally irrelevant and this is the most freeing experience of my life,  but I still want to change the world!

Thursday, November 22, 2018

Teaming Up For Success

The Collective invite shoppers to visit the 'top end of town' this Sunday 25th November.  Four local business owners are joining forces to build their individual business.  By working together Angie, Deb, Dona and Eliza are able to market together and share their networks with each other. 

The Mad Hatter's High Tea Party
Sunday 25th November 2:30 pm to 4 pm.
The Retro Diner 
'Top of Town'
Brisbane St, Ipswich
Tickets $20 each

Owning a small business is tough, so the owner of The Retro Diner took the opportunity to allow me to hang my work on the walls of her coffee shop.  I was just exploring POP ART! That was popular in the 1960's through the encouragement of my mentor Irene at Aspire Gallery.  The series fitted in well on the Diner walls and they're not just for decoration, they are available for sale! 

The Mad Hatter's High Tea was the idea of Angie to bring a special experience that only the four of us could offer.  Angie has the venue, Dona has the tea, I have designed the diner's new signature range and Eliza has the artistic flare to bring it all together and have lots of fun while along the way.  Suddenly being in business alone as a women is not so scary. 

Angie is one of my biggest fans, business partner and friend, she has introduced me to Eliza and Dona to form a collective to build our businesses. Angie asked me to design the summer uniform for the diner staff and I am very proud of what I was able to deliver.  The design is now available to costumers on T-shirts, mugs, tea towels and aprons.  

Both Angie from The Retro Diner and Eliza form Limestone Emporium are happy to take your custom order to allow you to pick it up from a convenient location at the Top of Town.  Thank you ladies for inviting me to join the collective may we have lots of years of fun ahead of us! 

Friday, November 16, 2018

ndis and changing lives

My name is Deb Chilton and I've been blogging about my ndis journey since I began to think about what my life could look like under the ndis, can I tell you it is looking great and I'm standing tall. The National Disability Insurance Scheme or ndis is a national approach to supporting people with disabilities and family members to fully participant in community life, this includes schooling, education, employment, training and development, civic duties, sports and recreation; and arts and entertainment.  We are moving from a 'system of care' to a scheme that empowers people and families with disabilities to determine what they want their lives to look like.  There are 1.6 million people in Australia living with disabilities, the 460 000 Australian who directly benefit from support received through the ndis need assistance with daily living tasks.  This could include: everyday personal care; meals; housework; medications; transport; schooling; education; community life; money management; behavioural support; making friendships; and developing life skills.

So why is the ndis for every Australian? At the heart of the ndis is a universal need for belonging, It is time to acknowledge that people with disabilities and their family members belong! 

With belonging to a community comes 'rights and responsiblities'. Participants can not have one without the other; the right to determine 'how you want your life to look' and the types of supports you access comes with legal and moral obligations.  This challenges our traditional views that people with disabilities need caring for.  The truth is their are times in our lives that all Australians need care and we should not be seeing that as different or unusual.  In fact to acknowledge that is one step towards embracing inclusion and welcoming people with disabilities into our schools; places of education, training and development; the workforce, civic activities, decision making, arts and entertainment; and sports and recreation.  As Australians we all need some levels of protection too and to achieve that we have the rule of law.  State and federal laws govern every Australians life. So it is time to move together and empower people with disability to play apart in decision making especially when it comes to their own lives. So the question of whose lives are changing under the ndis should be 'everyones'.

More directly it is the lives of the 460 000 Australians living with disability.  The majority of disabilities are unseen and most people with disabilities need no assistance to live daily lives; those who do need various level of support. For someone who is unable to walk the only types of assistance they will require is a wheelchair, house and car modifications and maybe medical supplies. 

However their a those living in the community who struggle with things such as communication, sensory stimulation's, acting appropriatly, decision making and their are a small number of people who require assistance with every faucet of their lives, these are the participants that may require some type of traditional 'care and protection'.  However this traditional models need to change for all participants, if we are to ensure every Australian has the same rights to self-determine the types of supports they want to access.

In the main these individuals are under the Adult Guardian and these are the individuals whose plans will be directly managed by the ndia.  Under new federal laws any supports paid through the ndis must not place and individual at risk of harm (it is vital we don't let these protections rob participants of their right to choice in order to protect them).

The key to the success of the ndis is that ALL PEOPLE WITH DISABILITIES are participating in their local community at a level their individual impairment(s) allow, guided by the people in their lives who know them best, I count myself in this as I too ask for input from friends, colleagues and professionals as I manage my own supports.  

One of the original concepts of the ndis was it would pay for itself overtime, something even the federal government has lost sight of as the wheels appear to be falling off. The key to achieving this I believe is the word ' participation'.  Support under the ndis was not design to look after people in their own homes.  Rather 'supports' under the ndis should be maximizing participants level of independents in the community, for someone like me that's a personal assistant, that allows me to safely be out and about; for others its a piece of equipment; training and development; or individualized therapies.  

One of the more ambitious goals of the ndis was to see more people with disabilities participating in the workforce and earning a equal income.  For me personally this has been the case. I have always worked in some compasity after graduating from uni, but never in a paid role.  Not only is my small business growing I am about to be employed by Hirer-Up to work with individuals and families to achieve greater participation in the workforce, including business development skills. 

In growing my art practice, I now have a partnership with the 'Retro Diner'. My artwork decorates their walls, I have designed and hand printed a signature Retro Diner rememberalia  and staff uniforms will soon also bear my mark. 

You will find 'Deb's Corner' in Brisbane St in the Ipswich CBD.  My selected gift ware range is avoidable at Art Smith's in Arttime Supplies, Limestone Emporium and of course the Retro Diner.  My joining the Hirer Up platform is a chance to increase my engagement with participants who want to grow their compasity through accessing their ndis funds or set up and direct their own supports.  My main goal remains to exhibit and sell my artwork outside the Ipswich area. The reality of achieving this goal came a step closer this week with an acceptance of my art exhibition @ Geaser Gallery in early 2019.  Look out for more information on my Transformations exhibition in the new year. 

Increased employment opportunities for people with disabilities is one target area in the scheme, but the scheme was design to give social and economic support to local community, through creating new jobs and people with disabilities having more income to spend,  One of those new jobs is my consultant role at Hirer Up.  Hirer Up is a online platform to link participants to support workers who provide various type of one to one supports.  Such as inhome, personal care, community access, transport, training and education, mentoring and supports coorindations.  

ndis allows more Queenslanders to be supported to undertake their daily living task creating tens of thousands of new jobs.  I myself directly employ two staff and access another three staff through Hirer-UP. One of my team members works full time as my PA ensuring I am where I need to be on any given day, which on some days she is supporting me in my home studio.  Through using me ndis 'core' funding to self-direct my own supports, I am receiving many more business opportunities and now part-time work.  I will also be undertaking my first art residence in 2019 at Roderick Street Kindy.  I now need to print a work shirt to say my 2019 calender is full.

My ndis journey has change my life and will bring opportunities for me and my community in the years to come. 

Tuesday, November 6, 2018

ndis and new possibilities

The National Disability Insurance Scheme promised to deliver new opportunities to participants, including employment, more jobs in the disability sector and a participants focus support system. The ndis offered an opportunity to explore new ways to provide support to thousands of families living with disabilities. Prior to its roll out the 'support or care needs' of participants was determined by government departments and offer the assessment tools yielded no support or inappropriate supports.  The ndis recognizes that the bast people to shape a participants support system is the significant others in their lives; family members; unpaid carers; GP's; support workers and their natural supports network.  We are now moving away from a medical model of care, to a system that empowers families and individuals to be active in designing their own supports.

This involves an individual ndis plan for each participant, where they themselves determine what their daily lives will look like and for every participant that will be different.  ndis goals are the things participants want to do and the activities they choose to engage in. This may include things like school; sport; study; lifestyle; accommodation; work; community life; arts and craft; independent living skills or even politics.  The ndis encourages every opportunity to enjoy new experiences and try new things.  I know of providers in my local area have introduce many new opportunities to their programs and I encourage participants and their representatives to check them out. 

On a personal level the ndis has open many new opportunities and experiences. For the first time I am in the drivers seat of designing my own support network.  Under my ndis agreement I am self-managing my plan. This allows me to decide how I want to be supported. Do I want more direct support hours or do I want to invest in technology to improve my safety and independence? In my current support plan I am hoping for the latter.  In previous posts I have shared some of the payment structures issues.  Putting that aside the ndis has given me the opportunity to engage my own support workers and structure my team in the way that best meets my needs. 

Other opportunities I had under the ndis are to list my Small Business; extend my visual arts practice; exhibit my artwork in new places; and improve my independence through physio. I have tried a few times before to keep walking on my feet.  With regular physio visits and better treatment of my chronic health conditions, I am now successfully walking independently for short periods of time.  

The ndis has allowed me to set my own goals and determine how I wanted to achieve them.  For many years others determined how I would be supported and it wasn't always the appropriate. The ndis has given some participants the freedom to engage their own support staff. This is not a option for everyone nor is it a option everyone wants to undertake engaging their own staff.  However their are new services on the block that offer all participants the opportunity to engage support workers of their choosing. 

Online platforms such as Mable and Hire-up allow you to hire your own support team under the traditional banner of a support service. The are also disability support services that will assist you to self-direct your supports.  This is the type of new opportunities ndis hoped to deliver.  Traditional support services do not suit everyone and they can't offer the flexibility some who is studying, working full-time or running their own business needs.  Participants with fixed commitments or responsibilities for others can not rely on supports staff that are inconsistent or varied times of support.

Services such as hirer up recognize that supports work best when support workers and participants share a common interest. In my case that is arts and craft; gardening and fitness. So in self-directing I have sort staff with the same interest as me.  These online platforms allows works to communicate and meet-up before agreeing to work together.  Hirer-up also allows you to hire your own staff and have them register with them as the employee.  If you have your own team you can hide your profile and workers profiles from public view, so you can access their bookings; payments and invoices service. Participants also set up their own support plans for their workers to access on,  Hirer-up can be access by all participants regardless of how their plans are administrated.

I believe all providers can learn to create new opportunities for their participants using the traditional support service structure of governance.  We need to learn to give participants a chance to shine rather than over protecting them from the what ifs.' We can continue to offer duty of care and risk management through our policies and procedures.

Let's no let own fears deny others the opportunity to shine. Let's empower participants 'to have a go' because we never know just when we will discover a new shining star.  Let's give the key principles of the ndis a fair go!